I've been dealing with a pretty persistent flare for a few months. Usually I'm full of vim and vigor in the summer but not so much this year. My S.O. is used to my migratory behavior in the late fall and my hibernation in the winter but this flare and my lack of mojo this summer has her quite exasperated.
How do you help your S.O. cope with your illness?
There's no doubt in my mind that PsA has changed our relationship. No least of which is that I'm unable to make a financial contribution and don't do very much around the house and home any more either. I've worked hard to try not to stop my PsA stopping my husband having his Saturday afternoon game of golf or curtail his annual boys skiing holiday ... even if it has meant I've been lying in bed at home feeling sorry for myself. Maybe I'm Iucky in having a partner that only wants simple things from his life?
I have been trying to figure out what are the non-negotiables for him and trying to find how I can achieve that. One good example is our forthcoming holiday. Do I want a three hour drive to the airport, four hours on a plane, a week being bitten alive by mosquitoes ... not really! But is this important to my husband, to have a weeks rest? Yes! So can I manage my fatigue, stiffness, reaction to mozzie bites? I'll give it a go because he works stupidly long days getting up at 5:30am and not getting home from work until around 8:15pm so I don't have to worry about money etc etc. I've employed a cleaner, gardener and decorator to help around the home.
He misses our days out to walk on the beach, visit gardens, go to the zoo etc etc ... so I've tried to find ways to do the same things but in smaller manageable chunks for me. I bought folding chairs for the beach and a kite for him to fly instead of walking, bought season tickets for our favourite garden so we don't feel it's a waste of money only going for an hour, agreeing only to see our favourite animals at the zoo. I feel as frustrated as hell that I can't walk round art galleries and exhibitions or even go for an evening walk around our village ... so I've bought a second hand treadmill so he can at least see I'm trying! If this doesn't help then I'll be in the market for a scooter with go-faster stripes.
I hate to publically admit this but separate bedrooms, especially during the week, really help. He's not disturbed by my perpetually rubbish sleep.
It's tough jane, I don't have any answers. We simply muddle through as best we can. Hope that the otezla helps you get your mojo back ... or at least as much mojo as PsA allows .....
When we married, we had not much more than love, our ambition and the sure knowledge that we could depend on each other. So we did—on December 17, we celebrate 32 years of good, bad, indifferent, depending on each other through it all.
But to put it bluntly, we've been through hell the last five years. I spent a LONG time doing nothing but working, coming home and not sleeping well. Paul spent a LONG time getting more and more frustrated that I couldn't do the things we used to do. I can't tell you the number of times he mentioned how we used to take walks and now we weren't and so many other things. He was frustrated that I would not take the step to see a rheumatologist. I was frustrated that I couldn't take that step either. And frankly, in 2010, we physically separated in that I began to sleep on the couch and he in our bedroom simply because I could not sleep in our bed any more. It was just too painful.
We went through worse hell after I had shoulder surgery in 2013. I wanted to curl in on myself. He wanted me the way I was before surgery, able to make decisions. I couldn't. I still don't know how we made it through that first week other than we're both too stubborn to give up on each other.
For the latter part of 2013 and the first seven months of 2014, because of my own misunderstandings, I lost the certainty that he will always stand beside me. I lost my center--it affected every part of my life. Everything that happened since August 20, 2014, has proven like nothing else that he will always be here—sometimes in front of me, sometimes beside me and sometimes behind me, pushing.
We FINALLY began to talk when I went through my cancer scare August-December last year. He was THERE for me the day the nurse practitioner told me I had uterine cancer and was being sent to a gynecological oncologist. THERE for me the day Dr. Ueland, one of the top gyn-oncs in the country, told me I had uterine cancer, the only question was what stage. THERE for me the day I had a hysteroscopy. THERE for me the day Dr. Ueland called and said I had simple hyperplasia, treated with medication. He held my hand through doctor’s appointments, physical exams, a biopsy, two ultrasounds and a preop.
He was THERE for me while I struggled to acclimate to the med, THERE for me the night he took me to the ER and we discovered I was two units down on blood. THERE for me as we grieved the fact that we would never have children. THERE for me the day I was told I needed to decide whether to have a hysterectomy and THERE for me on December 1 when the meds finally kicked in. He held me as I cried, sometimes knowing why I did and sometimes, only knowing I needed to grieve or was scared…and how hard tears come for me. He was as comforted as I by Dr. Abbas’ wonderful compassion. All that time, the only thing I ever saw was love in those beautiful blue eyes. He has been angry and frustrated—and his voice has shown it--but it’s anger or frustration at the particular situation.
Slowly, slowly last year, we began to talk.We cried a lot. We talked about how frustrated we both were by PsA. We were more bluntly honest with each other than we had ever been in the 35 years (then) we had known each other, more bluntly honest than we had ever been in the 31 (then) years of our marriage. We cried some more. We found our way back to each other because we're better together than we are separately. One of the greatest compliments he ever paid me is when his mother was dying. He called to let his Aunt Jo know how Helen was. Jo asked where I was. With a catch in his voice, he said she’s where she always is, standing right here beside me. And he is with me.
This summer, we've done more than any time since this PsA journey started. We've saw John Prine in concert the end of June and Vince Gill on 9/12. We have tickets to see Don Williams on 10/17 in Gatlinburg. We've been to the mall several times. We've done it this year because I feel better than I have in *10* years!
He went to court with me in December of last year and when I was second-guessing myself, he said I think you’re a hell of a lawyer. You did your job. Other people needed to do theirs. He drove me to the penitentiary Friday of the week I testified—and I got to see it through his eyes, not my jaded ones. He was in court with me in May and began to understand in a very real way why I'm on a trial team and why I'm working so hard for this client. he was appalled at the "just us" present in that client's case. He was in court with me as I testified for another client last week. On the way home, he told me he was proud to sit and watch me testify, proud of me and proud of the work I do.
We had a little tiff on Sunday, but this time, we talked about the whys and wherefores of why my feelings were hurt and how we might change things. And we cried again.
One more thing, since the meds kicked in on December 1 of last year, I still go to sleep in the recliner but most mornings, I'm in bed with him (we HAVE to get a new bed SOON). More than one person has remarked how different we look and sound. Heck, my rheumy even remarked on it when I saw him in August. (I think Paul and I may have blushed). Good friends know it's because we're physically close again. It means a lot to both of us that we're able to share--and enjoy--that closeness again.
That's a long-winded way of saying we've been through hell but we found our way through it even though I'm still not sure why or how we did it, other than sheer stubbornness, the fact that we were friends before we were lovers or married, and we both realize we're better as the two of us fighting battles. My wish for you is not the hell we went through but an easier route.
Wow! Jules, sixcatlawyer, thanks for your honesty.
The grief for the life that once was is probably the toughest part of this. Trying to keep my ego in check is part of it, too. Unlike the two of you, my S.O. and I are still pretty new at "us" but we are finding a way through it--even if the way forward stings a little bit! Again, thanks for your willingness to share.